Raising an Autistic Child in the Era of COVID19

Like about 90% of Americans, I’ve spent the two months under a stay-at-home order.  Being introverted this would have appealed to me 15 years ago. I would have happily worked, read, and watched movies from my tiny one-bedroom apartment.  I lead a different life than that younger, thinner guy.  I’m a husband and father to an energetic special needs child. 

Cristian, like many autistic children, thrives on routine.  Until recently, the school bus picked him up five days a week at 7:15.  For Cristian, school was about more than basic math and advanced crayon.  Cristian’s school, the Gersh Academy, structured his schedule so his ABA, OT, PT, and Speech therapies were part of his weekly schedule, per his IEP.  When he’s on a routine, Cristian is a cute five-year-old boy — disrupt his routine, and cute goes flying out the window.

My son’s world changed on March 15th, when Nassau County closed their schools, because of the pandemic.  Like many parents, Esther hoped it would be a short-term thing.  As a news junkie watching the numbers rise and the daily news briefings, I knew he wasn’t going back to school anytime soon. 

The Pandemic is an unprecedented event, and for two weeks, schools scrambled putting together plans for virtual learning.  Esther and I put together our own plan to keep Cristian engaged, entertained, and to minimize regression.  Besides being on the spectrum, Cristian is ADHD, the hyperactivity is more challenging than the autism.  Esther and I have sought outlets for his excess energy — it’s become more challenging in the era of social distancing.   

The first days were easy. I’d time his trips to parks so he could run around the playground before the locals came out for their morning walks or before it started raining.  Two weeks later, I took Cristian to the Jamaica Bay Wildlife Preserve; it was big and empty or taking him with me to the cemetery.  As I paid respects to my Dad, on what would have been his 94th birthday, Cristian ran around a large, empty grass field, enclosed by iron gates.  Sometimes you have to get creative.

I’ve spent the past two months home with Cristian, juggling, working from home with his schoolwork.  Morning Zoom classes and therapy sessions part of our daily routine.  Like most people, I can’t wait until our lives return to normal.  The challenge is opening our society in a responsible way and hoping Cristian’s regression is minimal.

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Never Underestimate The Little Things

Cristian as Baby Superman

I have a fond childhood memory getting haircuts from my father.  On Sunday mornings after church, while Mom made breakfast, and Abbott and Costello movies played in the background, Dad cut my brother Bob and my hair.  The long process usually resulted in a buzzcut — a crooked one — if we turned our heads or sneezed.

 A few years later, Dad became friends with a charming Italian man named Franco, when his family moved next door to us.  Dad helped Franco with household projects, and Franco, who was a barber, cut our hair — retiring Dad’s scissors once and for all.  The fee for these projects was a bottle of wine.

When my wife Esther and I became parents, I looked forward to a similar father/son bonding moment.  We’d get haircuts then go for a slice of pizza afterward.  We waited over a year for Cristian’s first haircut.  We weren’t lazy parents but his birthday is in October. Cristian’s size and long wavy hair made him a perfect Baby Superman for Halloween.

Cristian’s first haircut, before the tears started.

A week after Halloween, Franco came over for the long-awaited haircut.  It didn’t go well.  Although Esther did her best to distract the baby with her iPhone and his favorite toys, he squirmed, cried and screamed.  This concerned us, but Franco reassured us, telling us this was common for kids his age.

It wasn’t until Cristian was diagnosed as On the Spectrum, that we learned about the sensory issues autistic children experience.  They could be under-sensitive to pain, yet hyper-sensitive to clipping nails or haircuts.  Esther clips Cristian’s nails while he sleeps, and his feet still flinch involuntarily while clipping his toenails.  We found a solution for his nails — haircuts are another matter.

For Cristian, the vibration of metal clippers is like someone running their fingernails across a blackboard.  Franco no longer cuts Cristian’s hair, he became afraid of him and started crying whenever he’d visit.  Cristian’s haircuts are now a well-choreographed family project.  He sits in Mommy’s lap in the barber’s chair, while I stand on one side with the barber on the other.  Working quickly, I hold Cristian’s head or chest, as the barber cuts one side or the other, while keeping a watchful eye for a headbutt or a kick in the crotch.  He’s only five, but a well-placed kick still hurts.

We recently found a glimmer of hope.  A parent in a support group we attend recommended a barbershop in Whitestone catering to the autistic community.  During our first visit, Cristian’s barber told us, “Give me three haircuts, and you’ll see a difference.”  He was sensitive to Cristian’s specific needs and uses specially designed plastic clippers. 

His haircuts still haven’t gone smoothly, but they aren’t the traumatic ordeal they once were.  Considering where we started that’s progress.

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A Gift For a Day and Another For a Lifetime.

It’s been a while since I’ve posted new material – about eight months.   A few things changed since my last post while others have stayed the same.  Cristian has kept Esther and I busy.  I’ve been writing — just not for this blog.  I’ll be posting about that in 2020.

A few months ago, Cristian turned 5.  Last year, I wrote a heartfelt post for his birthday, this year we focused on giving him a birthday party that focused on the children.  Too many times, we’ve gone to birthday parties disguised as weddings.  I’ll admit, I enjoyed the bacon-wrapped scallops, pigs in a blanket, and open bar — a lot — it wasn’t how we wanted to celebrate Cristian’s birthday.   Cristian and his cousins had a blast running and running and bouncing around the trampoline park where we celebrated his birthday.

In addition to planning his birthday, Esther and I spent much of 2019 finding a good kindergarten for Cristian.  The old me would have spent a good twenty minutes goofing on any person using that last sentence.  It’s amazing how one’s opinion changes when one’s perspective does.  I still goof on things, like gender-reveal parties — I was at one of those a few days ago.

In New York City, special needs children, including those with autism, cognitive delays, emotional disturbances, sensory impairments, or multiple disabilities are assigned to a District 75 School.  We spent much of the past year having Cristian evaluated by various mental health professionals and specialists or conducting site visits of potential schools.  This daunting process is more difficult because the bureaucrats parents are required to work with — they don’t make the process easy. 

The system is Darwinian — set up for most to fail.  Esther’s background as an Early Intervention and CPSE (Committee of Special Education) Coordinator gave her insight to how the system worked — but it didn’t make navigating it easier.  To someone like me, it seemed like the goal was to have parents bang their heads against the wall from all the bureaucratic nonsense.  After a few too many bumps and bruises, many give up and quit.

Cristian is fortunate that his favorite person is a capable advocate.  People meeting Esther learn quickly that she doesn’t give up easily.  Whether she’s a running a marathon, or fighting for her son’s services—his mom has a never-say die attitude that serves him well. 

During an OT session

By late Summer, after a series of phone calls to case managers, and follow-ups with their supervisors, we ensured placement in a District 75 school where we felt Cristian’s needs would be met.  At the end of July, Esther and I toured the school with a group of anxious parents.  The administrators said all the right things as we visited the facilities where the children would get therapy and services.  Everything should have been fine, but looking over at Esther, I realized they weren’t.  She wasn’t feeling it in her gut.  If eleven years together taught me anything, it’s trust her gut. 

Trusting her intuition, she found a private school in Nassau County where she was blown away by what she saw.  They use the ABA (Applied Behavior Analysis) method, which Cristian has responded to.  Unlike the Public Schools we toured, they were better equipped to deal with Cristian’s specific needs.  Besides being autistic, he’s ADHD.  In a classroom setting, he’s a runner.  He ran out of his preschool classroom during this Turning Five Evaluation.  That incident stuck with Esther.  The non-answers she received on several school tours gave her that funny feeling.

A week later, Cristian and I joined Esther for a tour of this private school in West Hempstead — The Gersh Academy.  After several months of touring schools and feeling something was missing, we found a school that got Cristian.  There was one problem — the school was pricy — out of our budget pricey. 

After some research, we retained the services of a lawyer to take Cristian’s case to the Department of Education.  If the DOE cannot meet his specific needs, let’s put him in an environment with professionals who can.

Cristian started at The Gersh Academy in September, while his case is still pending.  Since then, his growth and development have been remarkable.

As I look back on 2019, I’ll remember two things about Cristian.  The joy and happiness he showed us bouncing around a trampoline park with his cousins and closest friends on his fifth birthday.  The other is the meetings, phone calls, and evaluations to ensure we placed Cristian in an environment that ensured his growth and development when that day at the trampoline park is a distant memory. 

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The Confessions of a Father of An Autistic Child

This is the face of an autism.

Hi, my name is Frank Priegue, I’m the father of an autistic child.  It felt good to write that.  This isn’t a deeply held secret, our family and friends are aware.  If you follow me on Instagram, I’ve included hashtags like #autism, #autismawareness, and #autismdads to my posts for over a year.  I’ve alluded to Cristian’s autism but never dedicated a post to this topic—until now.  This is Cristian’s official coming out as an autistic child.

Although greater awareness exists these days, few individuals without a relationship to someone on the spectrum know much about Autism Spectrum Disorder.  Before I became a parent, my only exposure came from the film Rainman.  I knew nothing of IEPs, Developmental Pediatricians, or District 75 schools.

Like many parents, I went through a stage of denial when Cristian was diagnosed.  My wife and I sat quietly with our mouths hanging open as we read the diagnosis.  How could our child be autistic?  He had a few eccentricities, which a specialist diagnose as sensory issues or developmental delays, but that doesn’t mean he’s autistic.  I convinced myself that autism is the flavor of the month diagnosis doctors are handing out in large numbers until the next one comes along.

Denial can be a potent concept.  You can justify anything if you repeat it enough—I know this because I did this with Cristian.  Esther and I are first-time parents of a delightful little boy.  He loves attention and admiration, rewarding those who played with him with a 1000-watt smile.  So when we noticed oddities, I easily justified them.

Cristian didn’t say his first words until well after a year, but so did I.  I didn’t speak until just before my second birthday.  I was a Stay at Home Dad for two years, working as a medical biller.  Cristian played with his toys or watched Sesame Street for a while I reviewed spreadsheets.  I kept convincing myself—he wasn’t receiving enough stimuli.

How can our child be autistic?

Cristian played by himself during story time at the local library and didn’t interact with the other kids during his My Gym class.  I thought it was odd he didn’t play with children he’s seen for several months.  The teachers told me many children less than a year old engaged in parallel play, so I didn’t think very much about it.  Cristian is an only child of older parents, we tried scheduling playdates with his cousins to socialize him, but they were 3 and 4 years older than him.

I was aware there were a few peculiarities making him different from other kids his age, but he was a healthy baby, his pediatrician assured of us this.  He scored high on the growth charts and he liked adults.  How could there be something wrong with him?

It became increasingly difficult to keep ignoring the obvious.  On a trip to Puerto Rico to introduce Cristian to the family did the differences become more apparent.  Esther noticed that he wasn’t exhibiting appropriate behavior for a year-old baby, as he played with cousins who were his age.

Despite Esther’s background as an early-intervention coordinator, I wasn’t totally convinced.  She was also a first-time mom, who worried if it was too hot or cold.  First-time moms worry about everything. It wasn’t until Cristian started rocking back and forth in his car seat with greater frequency or ran back and forth down the hallway in our home like he was running wind sprints that we decided to get him evaluated.

Being the parents of a special-needs child is challenging, but raising any child, is about meeting challenges when they arise, and giving the illusion that you have everything under control.  Don’t feel sorry for Cristian, he’s not feeling sorry for himself.  He’s a happy four-year old, who loves to run, play, and read books.  As his parents, all we ask for is patience, understanding and awareness.  Take the time to get to know him and be part of his world on his terms.  You might be surprised at what you see.

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Baseball and Parenting

Cristian not quite grasping the concept of running the bases.

I’m a simple man with simple tastes.  Those who know me will say I love photography, running, a good cup of coffee, Esther, Cristian, and typewriters.  You can add a sense of humor that’s either funny or annoying, depending on who you’re taking to.  If they really know me well, they will also say, warm beer, the Hallmark Channel, college basketball, and winter are not my thing.

The three months between Super Bowl Sunday and the new baseball season are a sad time.  The excitement of March Madness and filling out brackets is lost on me.  After a cold winter one phrase gives me hope, pitchers and catchers report on February 14th.  Some have Punxsutawney Phil, but for me the start of Spring Training lets me know warm weather is coming soon.

Cristian and I at a Father’s Day game

I approach the beginning of a new baseball season with the same excitement of a young child waiting for Santa  Claus on Christmas morning.  Then again the 2019 season starts on March 28th, that’s like putting up Christmas displays on Labor Day Weekend.   My better half and I have taken Cristian to several games since he was a baby, and already have tickets to our first game this season.  I look forward to sharing my love of baseball with him as he gets older.

There are some who feel taking a four-year old to a New York Mets game is cruel and inhumane punishment.  I disagree.  As a Mets fan, he’s learning loyalty and you don’t always get everything you want in life at a young age.  If I wanted Cristian growing up with an overdeveloped sense of self entitlement—I’d take him to Yankee games.

I love baseball and since becoming a father, I noticed the similarities between baseball and parenting.  Teamwork and coaching are important components in both.

Baseball players spend the winter working with personal trainers before arriving at Spring Training complexes in Arizona and Florida.  Countless hours are spent on back diamonds learning new skills and refining existing ones.  Time spent fielding grounders, working on a new pitch, or learning a new position could make a difference when it comes to landing the last spot on a 25-man roster.

It’s the same with parenting.  The past few winters, Esther and I spent countless hours keeping Cristian engaged.  We enrolled him in My Gym classes, after school programs, and taking him to several children’s museums.

Last winter we invested in a Leap Frog DVD 3-pack, that paid dividends.  We spent hours watching the adventures of Tad, Leap, and Lilly, again and again and again.  The result, Cristian knows the alphabet backward and forward and he can read.  That’s not to say there weren’t a few dicey moments along the way.

One evening he proudly shared the newest word he learned with me.  It had four letters, started with F and ended in a consonant.  Worried that he may have learned this new word from Daddy, I asked him to repeat it.  Imagine my relief when he repeated it, adding ribbit ribbit.

I always found baseball to be a metaphor for life.  There is a chance for glory and individual accomplishment but you must never lose sight of the fact that you are part of something bigger than yourself.  My playing days are over, but if I raise a child who grows up to be a quality person, I did my job well.

My reaction when I realized the word was frog.
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